Tag Archives: stress

The doctor opens the door with a knock, greeting me with a smile and a question that I can’t hear. This, of course, is the reason I’m sitting in the examination room.

“Which ear?” he repeats.

“My right,” I respond. This is the truth.

“How long has it been bothering you.

“Oh, since last month,” I fib.

I add in a half-truth.

“It started when my son had a cold.”

It’s true that I first noticed the fullness and buzzing in my right ear when my son got sick–in September. I caught a cold at the same time as him and have been snuffling ever since, my ear aching and distorting all sounds that come in on my right side.

But this is a Friday afternoon at the quick clinic after all. And there is no quick explanation for why I’ve waited three months to seek treatment.

So, I don’t tell the nice doctor how, last fiscal year, I used all but one day’s worth of sick time and the few vacation days that I had in my new job for Philip. There was the wellness check that prompted the autism screening. There were all of the missed days of work to get an evaluation and admission to preschool, plus IEP meetings, conferences and other visits to observe in the class or meet with therapists. When July 1 rolled around, my vacation and sick leave were reset, but I’ve already used several days for things related to Philip. So when I started having problems with my ear, I didn’t want to use my limited paid time off for a doctor’s appointment. At least not for one that was for me.

I don’t tell the friendly doc that I knew I could come to the quick clinic without missing work, but that I was embarrassed. How was I going to explain why I had no primary care doctor? That the last time I actually scheduled a doctor’s appointment was for my post-natal visit? Oh, wait, the last time was actually with a shrink for the postpartum depression after I cried during the entire post-natal visit. Then my previous employer switched insurance companies. I made it a priority to find a pediatrician for Philip when it changed and again when we moved. But for myself?

So, I lie to the doctor. I tell him I’ve had the problem for several weeks instead of several months. I don’t want to explain to him why I waited.

And I don’t want to reveal to myself why I am now sitting here finally getting a diagnosis and treatment.

I could lie to myself and say I went because I had the time. I was excused early from work following the staff holiday party.

I could lie to myself and say that I went because the noise at the party had really bothered me. I felt like I couldn’t hear anything. I began to fear that if I put it off any longer, my hearing would be permanently altered.

I could lie to myself and say that I finally thought enough of myself to take care of myself. That I believe I deserve good health as much as my son does.

While there is a bit of truth in each of these lies, I know in my heart that I had planned this trip to the doctor the day before. That’s when I noticed that Philip seemed to have a stuffy nose. That’s when I decided I needed to get healthy not for me but because my untreated cold could make my son sick.

Honestly, I’m already feeling better.

Would I lie to you?
Would I lie to you honey?
Now would I say something that wasn’t true?
I’m asking you sugar, would I lie to you?

–Eurythmics

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I’m a working mom with a stay at home husband living in the midwest. I started blogging about my son on his first birthday, intending it as an electronic photo album. Our now 3 1/2 year old son was diagnosed with Autism Spectrum Disorder earlier this year. The blog still serves its original purpose while also helping me think, learn and adapt to life with autism.

I’ve been pushing down the words for months. Holding them in, sweating and pounding them out as I push myself on runs, sweeping them to the side, swallowing them with my dinner, and those words have clogged my brain and made me feel claustrophobic. Lately I have moments where I cannot breathe and I have to stop and stand still, quiet my racing heart and clear my mind. I stand in the bathroom and let the tears fall silently for a few moments before putting my face back together. I start to release the valve and then I walk away from the computer. I have posts in my draft folder titled, “More Than a Housewife,” “Grief,” and “Unexpected.” I cannot finish them and push publish. Too raw. Too much.

A week ago I had a string of days in which I awoke in the early morning hours because of nightmares. Five nights out of seven my eyes snapped open to register the darkness, my heart crashing against my ribs, the sheets and my tank top damp with sweat. Images and scenes, worries and fears brought forward so clearly tears pricked my eyes as I tried to get back to sleep. These awful dreams were never the same, but they all centered on the Roc, except for one. I’d lost the Roc and couldn’t find him, he was choking and I couldn’t save him, he was a teenager and some boys lured him off the bus and beat him up and he couldn’t tell me who they were, and one dream in which the police knocked on my door to tell me my husband was dead. I don’t need a therapist to interpret those dreams.

I have been struggling with that baby fence again. Feeling secure in my decision to close the door on another child. The years of trying and wishing and hoping and the crushing disappointment of loss too much for me. I want to move on from these feelings. I want to stop thinking about it. I have days when I say NO loud and clear to myself. This one is more than enough. We three are good and I have all that I can handle. I have a few days here and there where my heart aches for the 6 month old baby I would be taking care of today.

I heard, “Wow, I don’t know how you do it. He is a full time job, and I can tell you work hard,” from the Roc’s spec ed teacher during one of our recent phone conversations regarding his spiraling behavior at school. It’s been hard to get these notes, these emails, these phone calls from school. Is he really acting up that much? Is it so different from last year? Why? Is this spec ed teacher, who is new to the Roc, and new to this age group, putting more emphasis on the negative? How and why is it so different from last year? Where is the positive? There is positive about my child, they see it right? Are they making sure to focus on the positive? What message is he getting at school?

School. Sh*t school is getting hard for my boy. He is struggling, but learning at his own pace. I struggled to hold onto the positive when we heard all that he cannot do and how far behind he is during our recent IEP meeting. I am dreading fall conference tonight. Dreading. Dreading. Dreading. The notes, emails and phone calls this past week haven’t helped. Homework battles ensue every afternoon after school. It is so hard to watch him struggle. Not much comes easily at school and it’s hard on my heart to imagine what he feels like when he’s there. What his body feels like, and what his heart feels like. I worry.

Recently, in a moment where I was so full of warring emotions I fired off a string of words to my friends, my autism mamas, my sounding board:

I’m feeling the panic well up inside. I’m fighting it. It’s winning. There is just SO MUCH to teach this child. How will I do it all? How can I prepare him for the world. The smallest interactions with people are so terribly hard for him. He’s having a rough go at school. Learning to read is frustrating the sh*t out of him, math is so hard, everything is hard. Friends? What friends? I’ve seen the looks, I notice the avoidance. Oh my heart.

On a walk at the dog park this afternoon he told me he wished we had more kids at our house and then asked me, “What were you going to name that baby who died?” Oh my heart. I thought my chest would explode. Oh my heart.

This is hard.

This is hard.

Some days I am overwhelmed with all that we are working on right now. Right NOW. Actually, many days, no most days lately I am overwhelmed by all that we are working on Right Now. All the things I still need to teach this child that other children pick up through osmosis. The school stuff, the at home stuff, the daily living stuff, the friendship stuff, the conversation stuff, the anxiety, the frustration, the….everything. The small things all the way to the huge. There are not enough hours in the day. I waste no time, and yet I do not have enough.

How do I get it done? How do I fit it all in?

I know there are no simple answers. Small bites a friend told me.

Keep breathing.

This is hard.

There is so much more to say.

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I’m a full time stay at home Mommy to my eight year old son “the Roc” who was diagnosed with autism in Dec 07. Married to a Jersey boy whom I call “GC” (as well as “babe.”)

I am doing the best I can, which means acknowledging that it will never feel like enough. I am only human.

I am gaining patience, resilience, wisdom and strength. I don’t see it; I don’t necessarily feel it; but it’s true. It just has to be true.

My home is a disaster – whether due to my Tasmanian devil child, diminishing time and money, or pure, unprecedented exhaustion (or a combination thereof). I must learn to care less.

I have lost sight of my identity, my friends, my professional drive, and my peace because I am laser-focused on my child’s well-being and future readiness. Still, I can take baby steps for my own sanity. For example, today, maybe I’ll shower.

I find myself saying and doing things I never imagined due to my child’s absurd, unpredictable behavior, interests and needs. I want to cry on many occasions; but it always feels better to laugh.

I am overwhelmed by the seemingly infinite cures, therapies, medications, treatments and diets that I am told will help my child. Some will help; others won’t. We’ll unapologetically do what works best for us, when it works for us – holistically, logistically and practically.

Each year, I will continue to search for the perfect school scenario for my child; nothing will ever fit quite right. I will take it day by day,year by year.

I am my child’s best advocate. I will trust my instincts. I will consult with professionals, doctors, teachers and psychologists; but mostly I have to learn to trust myself.

I will feel judged. Sometimes, I really am being judged, so I should grow a thicker skin. More important, however, I am judging myself, and I need to learn to be kinder to myself.

People will say, ‘I don’t know how you do it’ or ‘you’re an amazing mom.’ This inexplicably will irritate me since I wouldn’t dare admit that I also ‘don’t know how I do it;’ and usually disagree about the ‘amazing’ part. I do it because I am a loving mother. That is all.

I can’t do this alone; it does take a village. My village should include family, friends, caretakers, teachers, health professionals and therapists. When the village I have isn’t complete or up to par, I must seek a new village – like Twitter.

My child might hit me, hurt me or run from me. I cannot take this personally. It’s not about me. It’s about her: her frustrations, sensory differences and unfulfilled needs.

I always should be consistent, patient, firm and engaged. I frequently am not. I can always try again tomorrow.

I will realistically prepare her with the tools she needs to reach her potential. That means:

If she can’t or won’t find her voice, I will teach her other ways to communicate.

If she can’t or won’t be safe, I will find ways to protect her.

If she can’t or won’t learn how to survive in the social wilderness, I will place her in situations where she is accepted and happy in her own skin.

While some days I feel hopeless, I never, ever give up hope. I am her mother. And she is me.

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Whac-A-Mole Mom blogs over at My Whac-A-Mole Life, described as “the rants, raves, celebrations and tribulations of a crazy-busy, special-needs, mom-workaholic.” She has chosen anonymity for reasons she explains here: My Secret Identity. She will reveal, however, that she lives in the Southeastern United States and has two children under 12 with more diagnoses than she can count. Careful readers of her blog have discerned that she has worked as a journalist, corporate executive and nonprofit professional.

Have you ever had one of those moments where your mouth falls open and you have to pick your jaw up off the floor? I had that very thing happen today. While I was having a rare ‘spa moment’…let me clarify…I was at the chiropractor to have my neck put back in to place, my doctor, who I’ve seen for 15 years, says to me, ‘You have stress in your life, don’t you?’. I replied, ‘Maybe a little…..’. He was pulling my chain. He knows what my life as a special needs parent consists of. Apparently, the areas in my body that were showing the most signs of needing attention were my neck, shoulders and head. Cue the tension headache. That leads me to address this area of ‘stress’ in our lives. Every single person has it. Let me make myself loud and clear. I know that the entire human race, special needs parent or typical parent, carries quite a load. Here, I want to focus on us special needs parents. To cover all the areas, lets break it down into sections.
First stop, Physical Stress. There are so many different ways that we have to care for our kiddos. Everything from lifting, changing diapers, dressing, bathing, feedings, giving meds, fighting sensory meltdowns, learning new medical treatments, daily therapy regimens, extra laundry, countless appointments, hospital stays, the average 2-4 hours of sleep every night for years on end….and the list goes on. Our bodies show the wear and tear of this schedule being repeated day in and day out. It’s inevitable! However, the duties that incur stress don’t stop here.

Let’s move on to the Mental Stress. Please tell me I am not the only one whose brain NEVER stops. The thoughts at 1am…. ‘I need to call Neurology in the morning to make sure that the Physical Medicine doc knows what the Developmental Pediatrician said yesterday.’, ‘I need to get that script moving for the Occupational Therapy.’, ‘Oh dear God, another surgery? Guess I should start taking care of….’. The ‘To Do’ list go on and on and on. We live and breathe the medical terms, diagnosis, meds, reactions, new docs, etc. We do things we don’t even know we do! We are subconsciously watching every single move, breath, swallow, and diaper, because at any given moment, we will be thrown for another loop, be in the Emergency Room, and the doctor will want to know the minute by minute detail of the last 24 hours. That includes what our child does while sleeping…..

How about the Emotional Stress? Yes, I will admit, I do cry in the shower. I try very hard to contain it there, because I don’t want Boo to think I’m upset about her. Sometimes though, Momma needs a good cry. Let’s face it, we are talking about life-threatening situations not just every now and then, but daily. Whether it’s a serious medical crisis or a sensory meltdown that propels your child to run from you in the parking lot, your emotions and body are always on guard. Add in what other people think about what you are doing…. you might as well call it a day!

Anyone have Marital Stress? First off, let me say that I absolutely adore my husband. I married the man because I not only love him, but I like the person he is. Yet, I am so drained by the time I get alone with him, that I come across grumpy and short because the only thing running through my mind is, ‘Get me to my pillow so I can get just a little sleep’. In our 6 years of being parents, we have been alone maybe 4 nights. Usually, once we are completely alone, we zonk out! We are both so drained from the day in and day out of special needs caregiving, that we snuggle down in and saw logs! There are some areas that we try to do daily, weekly, monthly… We try to laugh a little and tell each other, ‘I Love You’ every day. To know that even in the midst of this craziness, we are still important to the other. At night, when all is quiet… at 10p or 12a, we sit on the couch and snuggle to a comedic tv show. Something that takes our brains to a lighter level. We are working very hard at trying to get one meal a month, just the 2 of us. No kids, just the 2 of us on a ummmm….what is that? A DATE! Yes! Sorry, I still get butterflies.
If you are like me, you also have other children who need a Momma too! They are just as important and need to be held, listened to, and encouraged. When the heck to you have time to clean, do laundry, grocery shop, weed the flower beds……my time is usually between 9:30p and 2a. When I want to be with my hubby or sleeping. See, you are not alone!!!!! It is a seemingly impossible situation that we live in!

I want to take a second to chat with those of you who are on the outside looking in. Maybe you are a grandparent or a friend to someone who has a special little kiddo. I hear often that people don’t know how to help or what to do. Listen to me loud and clear. It’s little things that mean the world to us. Drop off a meal, but be sure to know if there are adjusted diets. Offer to come and clean the toilet, mop the floor, make the beds, fold some laundry, any little quick job that helps us ‘feel’ better. Give an hour of your time for whatever we may need. Send a card of encouragement. Call and see if there are some grocery items that need picked up. Run thru Starbucks and get Momma her favorite drink…odds are, we haven’t had one in ages. Realize that we may not be able to talk on the phone due to our daily routine, but we thrive on adult conversations. Stop by, and just chat about something besides medical terms. We are still people on the inside that are getting buried by this life we live. In stopping by, please don’t judge our house, appearance, or expect us to wait on you hand and foot. Our world never stops, so those around us need to be willing to hop on the ‘treadmill’ and walk a mile in our shoes. Most of us have no life outside of Special Needs. That is the truth. We are not ignoring you. We are simply immersed into giving our child(ren) the most normal life possible. Things that the world takes for granted. Please, be understanding and for a moment, learn what it’s like and put yourself in our position. We need you like you need us.
Mommas, my doctor reminded me today, what we have all heard a million times. You can’t give to those around you unless you have given to yourself. He encouraged me to take 5 minutes a day to recharge. Close your eyes and breathe. Read a chapter in a book. Pray. Paint your nails. Listen to a song. You have read those articles that talk about our stress levels being comparable to combat soldiers, right? Shaving somewhere between 5-15 years off of our life expectancy. You are worth this. Your family needs you. Start right now. Give yourself some air and remember, that you have been Created BEAUTIFULLY Special.

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I am an almost 30 year old SAHM with 3 kiddos and am married to my prince charming. I quickly learned that life would not go according as planned when our first child was born with Cerebral Palsy. Now, at the age of 6, our little girl has almost 20 separate diagnosis and is our miracle baby. The doctors didn’t expect her to live past her first birthday, but she has proven them all wrong. ‘Created BEAUTIFULLY Special‘ was born in my heart to show what the special needs journey is really about and to showcase individual kiddos beating the odds.